![]() MSUD is a recessive disorder inherited from both parents. If diagnosed late, as many of my friends were, the patient can suffer from brain damage, seizures, blood toxicity, cerebral edema (brain swelling), and even death. ![]() In order to keep the patient from suffering severe brain or physical damage, he or she must be diagnosed within four to seven days of birth. The patient with MSUD cannot process three essential amino acids in protein-isoleucine, leucine, and valine. Running high levels of protein can cause irreversible damage to a patient. The smell gets stronger as the levels of protein in the blood get higher. MSUD is a metabolic disorder classified by the burned maple syrup smell in one’s urine, ear wax, and body sweat. Every girl likes to smell sweet to a boy, but with MSUD, to smell sickeningly sweet means something is wrong. I mean, what sixteen- or seventeen-year-old girl wants to explain to her boyfriend about her disease? Really, having to say urine to a boy is humiliating. First of all, the name of the disease itself is embarrassing. Life with MSUD (maple syrup urine disease) is no picnic. Library of Congress Control Number: 2016905451Ĭhapter 8 Mismatched Memories of Pittsburgh from My PicturesĬhapter 10 Adjusting to Life after TransplantĬhapter 12 My Favorite Recipes Chapter 1 MSUD Explanation The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.Īny people depicted in stock imagery provided by Thinkstock are models,Īnd such images are being used for illustrative purposes only. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.īecause of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. No Longer Not Allowed narrates how, by the grace of God and the unselfish act of a donor family, Gingrich was given a second chance to live life to the fullest.Īll rights reserved. Gingrich also includes recipes and journal entries from her parents who provided unconditional support. She tells about the hospital stays, the ups and downs of healing, subsequent health issues related to the transplant, and recovery. ![]() In No Longer Not Allowed, Gingrich shares her story of living with the disease and then undergoing a liver transplant at the age of twenty-one in January of 2006 at Pittsburgh Childrens Hospital. It can only be cured with a liver transplant. MSUD is a disease in which a person cannot process protein normally. Amy was born with MSUD (Maple Sugar Urine Disease), a metabolic disorder classified by the burned maple syrup smell in ones urine, ear wax, and body sweat. She didnt like it, but she had learned to live with her genetic prison. She felt trapped by having to monitor everything she ate and limit physical activity. Amy Gingrich saw her disease as a prison.
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